March 30, 2022

Dear Friends,

Do you know a hero? Nominations for Ciara’s Spirit of Hope Award are open now through May 13, and we need your help finding our next hero to celebrate! Ciara’s Spirit of Hope Award is designed to honor individuals who have gone above and beyond, and who have made a significant contribution for the Dravet community through their work with DSF. Submit a nomination today! 

Just as we honor our DSF families and friends, we invite you to join us in honoring our children through our second Wings of Hope Butterfly Release. For just $25 you can sponsor a butterfly in honor or in memory of a loved one. Wings of Hope will take place on June 25 in Fort Worth, Texas at our 2022 Conference to celebrate hope and remember those who have passed. 

From parents and siblings to families and friends, we know our DSF community is full of incredible people making an impact on those living with Dravet syndrome. As always, we remain grateful for you.


Dravet Syndrome Foundation


Siblings Are an Important Member of Your Team

Super Sibling Kit

April 10 is National Sibs Day, and we've got the perfect way to celebrate! Families can request one of our VIP Sibling Kits, which includes a journal, a positive affirmations coloring book, a stress putty, and more. It can be hard for brothers and sisters when a sibling has a chronic illness like Dravet syndrome — that's why our kit is designed to remind siblings how important they are and to provide simple communication tools that let those around them know how they’re feeling. Get your kit here!

Sanguine Biomarkers Study

Contribute to New Treatments

The Sanguine Blood Biomarker study is requesting participants for an at-home research study that could aid in the treatment of Dravet syndrome. Find out if you qualify. Learn more.

Steps For a Cure

Run (or Walk) For a Reason

Every step toward a cure counts! Join us for a 5K for Dravet at Golden Gate Park in San Francisco on April 30. Can't make it? You can still help! All funds raised go towards research. Learn more.

SUDEP in Dravet syndrome

Support SUDEP Research

Help us learn more about the aspects of Dravet syndrome that are associated to higher risk of SUDEP through the study "Clinical Markers Associated with SUDEP in Dravet Syndrome." Learn more


News and Events

  • Give Up Your Cup: We’re in the final stretch for Give Up Your Cup. As March comes to an end, give up your coffee, tea, or other “cup,” then donate what you would have spent to DSF. You’d be surprised how much of a venti-sized impact it can make!

  • DSF Conference: Join us for DSF’s 5th Biennial Conference on June 23-25, 2022, in collaboration with Cook Children’s Medical Center in Fort Worth, Texas. This 3-day event unites all groups committed to improving the lives of those with Dravet syndrome – including families, caregivers, clinicians, researchers and pharmaceutical professionals. Apply for our family scholarship TODAY to make sure you can attend!

  • Miles for McCall: Dan is a competitive ultra-cycler preparing for the world’s toughest bicycle race, Race Across America, in 2024. As he trains and competes, Dan has dedicated his cycling journey to raise awareness and funds for Dravet syndrome research. Follow along to cure Dravet syndrome. Join the fight by donating or even cycling for a cure yourself!

DSF moderates private support groups for parents and caregivers of loved ones with Dravet syndrome.
These are great resources for families to ask questions and find support. 
Learn more

DSF is proud to be a GuideStar Platinum Nonprofit Profile participant.
Platinum lets us show quantitative metrics on the progress we’re making toward our mission!
Learn more


Dravet Syndrome Foundation
PO Box 3026  | Cherry Hill, New Jersey 08034
203-392-1955 |

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